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Dearest Flare Up......You are an A#@HOLE!

7/12/2012

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My first significant flare up since diagnosis and I have now reached the stage of being pissed, which hovers right over depression. If I could punch my flare in the face I would, but I would only be punching myself. This flare up is like a house guest that has over stayed his welcome. I am glad you stopped by to remind me that I do have a chronic illness and I must take good care of myself, but I get the point and it is time to leave. I will celan up the mess you are sure to leave behind, just go.

Here are just a few examples why I am now at the pissed stage.

1. I had a date during the week right around when my flare up was starting. I didnt want to cancel becuase I was pretty excited and my body was still doing ok, my mind however was on a whole other planet. You know what I am talking about, it is like being high, but not the funny laugh at your cat kind of high only a teenager knows, but the holy crap I am paranoid, are those the cops? So, I didnt cancel my date, and I am sure I made a fool of myself. The brain fog is the worst! I would keep this pain any day if my mind would just be clear.

2. "You dont look sick". I hear this at least 5 times a day. God Damn it! I know I dont look sick, but my joints are on fire, I cant sleep and am pretty sure that if you ask me to spell anything with more than 3 letters in it, I will fail.

3. I screwed up at work all day today. I was making orderst that were not even close to the order the customer gave me, I could not lift more than 2 plates at a time, dropped 1 out of 3 things I picked up,  mumbled and looked at customers like they were from another planet when they asked me  a question that my RA fogged brain could not process.

4. Hello, is my Doc around? I dont know what to do. I called my Doctor, but while I wait what th heck do I do? I am working to the best of my ability, getting small stuff done, trying to resemble my normal self as much as possible, but what else can I be doing? Do I just wait? Should I pray? Drink some weird potion? Do a tribal dance? Sleep?  Guess I will just keep taking steriods until I here from my Doc or the roid rage begins, I wonder which will happen first? ;)

So, I have decided I am going to rest, because I really need it and while I am not sleeping I am going to develop a serious plan of attack against this flare up. I will snort steriods if that is what I have to do to get rid of this thing. Cross your fingers my Doc gets back to me stat so I can get this taken care of.


****excuse misspells or typo's, I am much to tired to copy paste and spell check*****

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I work out.............and med dosing.

6/27/2012

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I cant believe how long it has been since I have update information. Life just likes to get in the way sometimes. I am back! I hope this finds everyone well.

First, I would like to talk about medication dosing. I currently take my Enbrel injections and Methotrexate once a week. I feel like I am in remission and would like to do an every other week dosing. Has anyone had luck with this? My Rheumatologist wants to keep me dosed how I am, but my previous rheumatologist was going to take me off the Enbrel eventually. If anyone has any feed back on this it would be greatly appreciated.

If you are on Facebook check out the page Athletes with Rheumatoid Arthritis. This is awesome! I cant belive what people are able to do living with RA. It is a reminder of how strong the human spirit truly is.

Have a pain free weke
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1 year since my diagnosis.....................

2/13/2012

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It was a year ago this week that I was driving to Chicago with a friend to celebrate my 30th birthday. During that ride I received the call............Carrie you have Rheumatoid Arthritis and we would like you to go get some x-rays tomorrow. What a scary day, I remember every detail, down to what I was wearing. It is now a year later and I feel like a different person. I have since gotten my disease under control, lost over 30 lbs (and counting), started nursing school, found a fitness regimen I love, did some traveling and made some great plans for the future. Like everyone my year has been filled with ups and downs, but all and all this has been a wonderful year. I have learned allot about myself and people around me. I have learned that I am stronger, smarter, and kinder than I thought. I learned that having RA has helped me as a student nurse better understand pain, making me a compassionate nurse. I have also learned............I have a lot more to learn. 

    For many years a goal of mine has been to complete a marathon. To me it is the ultimate success. If you can do this you have proven to yourself you are strong, dedicated, and fit. Well, this year is going to be MY best year and I am going to try and walk a marathon. Running is not in my cards at this point, my joints will not allow it, but walking is. I am going to see a podiatrist next week in hopes they can fit me for a special shoe that will allow me to complete this goal of mine. My heart is in it, my foot is not so sure. Joint damage in my left foot leaves me in pain just after walking two short miles, and I plan to walk over 26. Cross your fingers friends, for the podiatrist is my only hope:)

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Flare up? or disease progression?

11/21/2011

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Being that I have had RA for less than a year, I am still learning what the heck my body is doing. I had been doing quite well on Enbrel and Methotrexate. My Doc suggested Cellebrex and to raise my MTX a bit, but after reading the side effects I just didnt feel it was the best option for me. But lately I am wondering if perhaps I should start increase my MTX and start the cellebrex. I find my hands are stiff, my left pinky hurts most the time, every single joint cracks when I walk and I feel a little more stiff than usual. Now, how do I know what this is? Is it a flare up? or is my RA progressing? Is it the weather? Stress from life and school? I dont see my Doc till December, any feedback would be greatly appreciated. :)

Dont foget the to support your local Arthritis Foundation. They have begun sign up for the Jingle Bell Walk and your donation and participation is appreciated. I will be doing the Freeport, Illinois walk as I will be in sunny Florida for the Chicago event.

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It has been too long...............

10/30/2011

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It has been quite some time since I have updated the old blog here:) Life just got in the way. I started nursing school and had way too many distractions in my life. I can now say I have removed a major distraction and I have a bit more time to focus my energy in more positive areas in my life:):):)

As for the RA: Last time I saw my Doc I complained of foot pain, I always have it and only in the left foot toe box, just in varying degrees. She wanted to up my MTX and start me on cellebrex. I said ok and left the office. After thinking more about this I decided to try some other techniques before I add more junk to my body. Exercise, diet, and meditation was the plan. Well, I got side tracked, between school and a difficult break up things did not go as planned, such is life.

I forgot to ask my Doc, and maybe some of you can chime in here for me. If I am on this foot and I feel pain is that just pain or am I causing more damage? I have to remember to ask her this, you know those Docs, they rush you in and out of there so fast your head spins.
 
Now, I can say I have a clear head and a clear conscience. Since I let so much time slip by me without making major changes, I am going to up the MTX but not going to take the cellebrex. I am totally off steroids and seem to be doing just fine without them. The Enbrel has made a big difference.

 So, Wish me luck guys! Here is to new starts, they are a wonderful thing:):):) and to moms! I wouldn't be able to make it without mine, she is my light when I find myself in dark places. 
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Help!!! Steroid withdrawls??????????

8/31/2011

4 Comments

 
Over a week ago my Dr. called and told me to start weaning myself off the prednisone. I am alternating daily between 5mg and 2.5mg. During the last week I am having constant muscle aches varying in severity and I am very tired. After doing some research it seems this could be steriod withdrawls but my dose is so low. Can anyone help shed some light on the subject? Thank you very much for all your help:):)
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Enbrel, Nursing, and Fingers..............oh my!

8/26/2011

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Where to start! The last two weeks have been crazy. Today marks the end to my first week of nursing school and I couldnt be happier. There were times over the last few months I did not think I would be well enough to attend nursing school. But, thanks to a great Rheumy here I am!  It seemed like so long ago that I was anxiously waiting to hear where I was at on the Nursing school start list and when I would be able to begin my studies. Then the RA diagnosis........Things were changing so fast I had almost completely forgotten about nursing school. My hopes of starting  were buried under a pile of pain and confusion.

Today, I am feeling great! 95%. The Enbrel has made a considerable difference. I am still not a fan of the injections, or the site reactions. However, that is a very small price to pay for the way I am feeling today. Pain is not totally gone. I have problems in my thumbs, a nodule of my foot still,  pain in my muscle's some days, and just a few minor side effects from the meds. My Doctor called this week and said all my blood work up looked good ( except low D3) and I am starting to wean off the prednisone. My health is headed in the right direction!

Now, if someone could just tell me how to get past this finger pain so I don't fumble so much during school procedures and give me some motivation to start working out that would be very helpful:):):)

***I am working on some cool additions to the page and will be adding much new material next weekend***

Sorry for the delay in adding new material, there are just not enough hours in the day. Have a pain free weekend!!!




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To worry or not to worry.........................

8/19/2011

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This has been a very exciting week for me! I had my orientation for the nursing program that I have worked so hard to get into. After many months of being sick and almost completely forgetting about my goal of becoming a nurse, the day has finally arrived. The night before I was to be at school, I put out my clothes, because I  had to be sure and wear the right things so the kids would like me:) I woke up early, had a healthy breakfast, took my meds and went skipping out the door. As I walked into orientation I was so excited I could not keep the grin off my face. I was given my crisp white uniform, pile upon pile of paperwork, schedules, expectations, books, responsibilities, and warnings. Then reality set in a bit. This is going to be a tough couple of years. What if I get sick? What if I have a flare up? Cant think straight? Forget things? Try to microwave an empty plate of food again? Yes, I actually did that. People aren't going to understand what I mean when I say RA. As soon as the word arthritis leaves my mouth reactions go from being sympathetic to saying "my grandma has that" or "I know the feeling, my hands hurt when it rains." Then it dawned on me, this has all happened and I survived. I was around people who didn't get it, working two jobs, doubles all the time, juggling medications, learning how my new body worked and even tough my hands were swollen, my feet covered in nodules, fatigued, irritable, happy, sad, no matter what state I was in, I got through it. This is how things are going to be from no on. And no matter what, I will get through it.
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Shoe cemetery.....................

8/11/2011

6 Comments

 
I have a growing pile of beautiful shoes that I can no longer wear. Flats, pumps, sandals, and flip flops. My boyfriend keeps telling me to just give them away, but he doesn't understand that it isn't just the shoe I am giving away. It feels like I am giving away a part of myself. Wearing a cute pair of pumps on a Friday night made me feel beautiful. Now I have to choose between ugly gym shoes or kind of ugly gym shoes. I am not trying to be shallow, I absolutely realized I could have things way worse. However, being a young women who is still in college, I want to look fashionable and cute.  One of the hardest things for me now that I have RA is dealing with shoes. Why are the shoes that I should be wearing  the ugliest things in the whole world! New Balance makes very comfortable shoes that look like giant silver rocket ships on my feet! I wish I could go work for a shoe company for a day and just design a few pairs of cute shoes for myself. I know certain shoes just aren't gonna happen for me anymore, but that doesn't mean I have to be forced into a life time of Velcro grandma shoes! Actually, my grandma has cuter shoes than me! Not fair:( I am now on a mission to find shoes that are both comfortable and cute. If you know of any, please share:))))))
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Enbrel......................hmmmmmmm

7/20/2011

2 Comments

 
I am not sure how I feel about this Enbrel. I can tell you I HATE giving myself the injections. I am a giant baby and I literally have to hug a pillow when I take them. I refuse to let my boyfriend do it because I don't want to seem like an even bigger loser. I can also tell you the swelling in my foot continues and I am starting to have pain in new places like my thumbs and knees. I am not sure how to gauge this. Is it normal? I thought the Enbrel was supposed to stop this from progressing? I am not upset in anyway, just confused. I am still trying to figure out what my normal is, but that seems to change everyday. Good thing I wasn't very normal to begin with :)

I am thrilled to say I am going on vacation on Sunday to Cape Cod. My boyfriend and parents are coming as well. I am so excited. It has been a rough start to my year, as I was pretty sick for most of the first half of it. I am BEYOND GRATEFUL that I am well enough to be able to enjoy this time with my family.It will be a great break and we all sure could use it. When I return It is back to school to start my nursing clinicals!!! That means no more breaks for this girl. So, I am going to enjoy every second of this vacation:):):) 

Have a great week everyone!
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